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Tuesday, May 1

This was quite the interesting day. While walking to her school bus stop, Julia slipped on some sand and fell. She scraped her left palm, her right elbow, and especially her left knee. These were especially nasty because when she fell, she ground dirt and sand into the wounds. It was very difficult (and painful to Julia) to get them clean, plus it was a major production every time the dressings needed to be changed.

This was also the best time for us to bring Julia in for her monthly blood work. Mom drove her in for what turned out to be quite an odyssey. There was major construction on the way we go to get to Children's, parking was the usual nightmare it is in the middle of the day, plus the phlebotomy lab was a zoo. Plus, mom was trying to get to another appointment afterward. It was trying, but it worked out and they did get the blood drawn.

We let Dr. A.W. know via email that we went in, and within a few hours, she had most of the results for us. CK 93, AST 26, ALT 21, albumin 4.5, sedimentation rate 9, White blood cells 6.71, hematocrit 39.2, and platelets 410. All within the normal range! We are still waiting on LDH, Aldolase, and von Willebrands. This is good in that this is the first time the CK has decreased in several months.

Test Date Aldolase CK LDH AST ALT vW F8
1/18/00 6.5 72 247 23 20 168
2/29/00 6.0 74 230 24 32 190
3/18/00 5.2 54 213 25 25 148
4/18/00 3.7 50 190 22 13 145
6/6/00 5.6 67 204 23 21 148
7/8/00 6.0 72 248 28 25 170
8/5/00 70.4 77 219 33 32 137
9/2/00 7.2 77 227 27 26 98
10/7/00 6.2 80 201 23 22 133
11/4/00 5.0 83 213 30 27 137
1/9/01 9.8 78 197 26 24 101
2/3/01 4.7 73 212 28 24 91
3/3/01 4.6 84 211 28 26 123
3/31/01 5.2 98 209 26 21 141
5/1/01 4.8 93 219 26 21 105
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Wednesday, May 2

Changing Julia's bandages has already been reduced to just the knee - the other have scabbed over nicely already. She screams and cries every time we clean that wound, though.

Thursday, May 3

Tonight, while cleaning her knee wound, she said that it didn't hurt any more (!), but now it itched something fierce. Itching is supposed to be a sign of healing, but this time it was so itchy that she was crying about that. I put a little anti-itch cream in with the antibiotic cream, and that seemed to help.

Friday, May 4

While visiting a relative who was in the hospital, a nurse asked us about Julia's yellow skin. We explained that it is a side effect of her taking Quinacrine, which of course led to a discussion of JDMS. In a hospital setting, nurses should be aware of sick people, not only to protect their patients from them, but to protect them from the patients. She thought it may have been a jaundice that we didn't notice.

Monday, May 7

Julia's knee is doing a lot better; the wounds have scabbed over, and she's just keeping a bandage on it ti keep it from getting banged up more.

Wednesday, May 9

We got an email from Dr. A.W. late saying that Julia's Aldolase was 4.8 and her von Willebrands was 105 - excellent numbers! She said we could reduce Julia's Methotrexate dose from 17.5mg (7 pills) to 15mg (6 pills) per week.

Thursday, May 10

Oops! Almost forgot to change Julia's medicine to reflect the new dose. Caught her just a few seconds before she was going to take her meds.

Current Drug Dose: Prednisone: 3mg/day Quinacrine: 100mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 15mg/week

Sunday, May 13

Happy Mother's Day, all you moms out there!

We went to church in the morning, and because we missed Sacrament of the Sick last week, our priest offered to annoint Julia today. We gladly accepted his offer, and Julia got her annointing. Father also said that all the regulars at the community celebration of the Sacrament were asking after Julia. It's very touching to to know they care like that.

Afterwards, we did yard work all day, then took mom out to dinner. The weather was beautiful, if a bit cool, and we had a very nice day.

Tuesday, May 15

We had another visit to Children's Hospital today. It went very well! Julia's height (53", 135cm) and weight (83.5lb, 37.9kg) were both up slightly from last time, and her temperature & blood pressure were normal.

We first saw Dr. A.W. who ran through the usual interview and clinical exam. She was very impressed with the continued improvement in Julia's rash. It is true, even though it's hard to see when you see her every day. Her knees look completely normal, her elbows have definitely improved, and the areas on her chin have all but disappeared. She still have some pinkness on her eyelids, but even that seems to be improving. Good stuff!

After a while, Dr. S. came in with a doctor visiting from New York. He also ran through the clinical exam, and also commented on how great Julia's rash is looking.

He then said that this would be a good time to discontinue using the Quinacrine. He said that it probably wouldn't help the rash any more . The visiting doctor asked if we went to Quinacrine because of eye problems with Plaquenil, but we explained that the Plaquenil just didn't work for Julia, so we switched and were happy that we did. Anyway, it looks like Quinacrine is a thing of the past as of tomorrow! Good timing - we were close to needing a refill for her presciption. He did say that it would take several weeks before the yellow skin color (and glow-in-the-dark fingernails) would completely disappear, about the same amount of time it took for them to show up originally.

Wednesday, May 16

Current Drug Dose: Prednisone: 3mg/day Folic Acid: 1mg/day Calcium: 900mg/day Methotrexate: 15mg/week

Friday, May 18

Julia has her annual dance recital(s) tomorrow, and the Friday beforehand is always Dress Rehersal. It's pretty grueling - she has to be there pretty much as fast as she can get there after school, and often goes well into the evening. Anyway, they also gave out the photos that were taken a few weeks ago. Here's a sample - they came out great!!

Spring 2001 Dance Photo - Jazz costume

Saturday, May 19

I went off to donate blood first thing this morning, while Julia slept late recovering from Dress Rehersal. She had 2 recital performances to give this afternoon, and she needed her rest!

The recitals were in an elementary school auditorium, a much smaller venue than in previous years due to renovations being done. Because of this, there were only a limited number of tickets available - just 4 tickets per dancer total (not per show). Mom volunteered to help out and work backstage for the first show, while I watched the show (front row! center! incredible good luck to get these seats) with relatives.

The show runs about 2 hours, so it doesn't drag on forever. It was very entertaining, as usual, and Julia did a fantastic job with her group out there. I was very proud of her! Also, her rash looked great, and she kept up with her classmates completely. After the show, the instructor gave out 5- and 10-year awards (Julia just finished year 7), plus some special awards to certain dancers who showed a high level of dedication.

Mom sat in the audience for the second show, which she reported was every bit as good as the first show. After the second show, the awards were given out again, but this time Julia was give one of the "Outstanding Dedication" awards!! It was wonderful for her to be recognized again (she also earned this award 2 years ago), but I was disappointed to have missed seeing her win the award. Congratulations, Julia!

Sunday, May 20

Today, we took a road trip to the 25th anniversary party for a co-worker of Julia's mom. It was an eveny that was extremely reminiscent of a wedding reception. in fact, the original wedding party was introduced the same way, they did the usual dances, etc. The meal went on for hours, and there was much speculation around our table as to what we would do with 4 spoons each! Anyway, it was a nice event, and Julia had a good time playing with two other girls that were also seated at our table.

Saturday, May 26

This is the first day of a 3-day holiday weekend, the holiday being Memorial Day. Unfortunately, Julia has a major school project due next week, and she has a lot of work to do on it. Between this and all the stuff we have to do around the house, we may have precious little time to do anything fun and relaxing. We had hoped to go to a movie, but that look unlikely.

Her project is for Social Studies, and she is profiling the state of Pennsylvania. She had to do a 3+ page written report, a poster or other visual report, and an oral presentation to the rest of her class. All she has done at this point is the first draft of the written report, and a bunch of bookmarks to web sites. She (and we) has her work cut out for her.

Monday, May 28

This is the Memorial Day holiday, and as expected, we have spent a large chunk of our free time this weekend working with Julia on her report. The written (a 5-page double-spaced paper) and visual (a 3' x 2' poster) reports do look excellent, and her oral report is written and she just needs to practice it. Most of today was spent on this. We were all pretty tired of Pennsylvania by the end of the day (no offense to any residents intended!).

Tuesday, May 29

Something weird happened to Julia at school today. She was outside with her class, when one of her classmates asked why her face looked all red. Now, this is not her JDMS rash, but she had a bright redness around her eyes, nose, and mouth, and her face seemed a little swollen (we didn't actually see it - this was the description from the school nurse). It sounds like an allergic reaction to something, but she didn't eat or drink anything unusual, nor was she unduly exposed to the sun or any plants or animals. The redness and swelling subsided within a few minutes, and by the time Julia's mom showed up to have a look, Julia was fine. Weird, like I said.

Thursday, May 31

Julia's project was due today, and she turned in her written report and poster. There wasn't time for everyone to give their oral reports today, and Julia will get to give hers tomorrow.

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Updated June 4, 2001
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